Hi all As some of you know, I was diagnosed with MS in April based on MRI and clinical history (eye problems, sensory loss, slurred speech and pins and needles episodes on 2/3 separate occasions over the previous 15 months). I was diagnosed privately then moved back to the NHS as the insurance wouldn’t cover a chronic condition. The NHS basically treated me as undiagnosed and retested everything - repeat MRI and a multitude of blood tests, plus a referral to haematology to look into Hughes Syndrome (minor history of blood problems). I’ve just had my last results and everything is negative, expect the MRI which showed the same lesions as previously (I had no relapses between scans). So now surely the NHS has to accept the diagnosis? The consultant is pushing for a lumbar puncture, which I have decided to refuse. Is now finally the time that they might start talking DMDs? I feel if I’ve been in limbo for six months, despite being diagnosed!
I know it’s not much help to you, but I really can’t understand why they “refused to accept your diagnosis” in the first place.
I was also diagnosed privately, and in fact have the very same neuro on the NHS that I first saw privately. When the insurance no longer covered (like you) he just referred me…to himself.
There was no question of having to go through it all again. Also like you, I’m diagnosed based on MRI (x2, six months apart) and symptom history. I declined a LP, and my VEPs are (or were) normal.
I really can’t predict what the NHS will do in your case, but they do seem to be being as awkward as possible. Is your private neuro not also an NHS neuro, such that his opinion can be trusted within the NHS? I should think an MS specialist who takes private patients only must be rare to non-existent, as there just aren’t enough private patients needing MS investigations, and, as you say, they’re normally not funded any more once diagnosed. So I don’t see how the private guy would make a living, if he wasn’t also on the NHS. Looks like maybe he’s just not respected or popular in the NHS, otherwise why wouldn’t his colleagues accept his findings?
Stand your ground re the LP. Even the NICE guidelines say it shouldn’t be necessary, except where other evidence is inconclusive. But for some reason, the NHS still seem to want one in ALL cases. If you have fairly “classic” MRI findings (as I did), and consistent symptom history, they shouldn’t technically need an LP as well.
The only thing I would say is that I did have to have two MRIs, and for them to demonstrate changes, before my neuro would diagnose without a LP. Yours haven’t shown changes, so I wonder if that is the sticking point?
Were your 2-3 episodes clinically verified, or just as reported by you? Some neuros seem a lot stricter about this than others. Mine was prepared to take at face value that I’d had the attacks I said I’d had, even though I hadn’t been to the doctor about them, and there was no medical evidence. I think some others won’t take the patient’s say-so, and insist on waiting for an attack they can see for themselves.
Hope you get it sorted out soon!
Tina
Hi Tina and thanks for your response! My neuro is private only now. He works out of three hospitals and then the rest of his days are spent on MS drugs trials in London! He should be fairly well respected I would think! My NHS neuro admits I meet the criteria for MS but he wanted to provide a “differential diagnosis”?! I think they’re just wasting time! My episodes were: Jan 2011 pins and needles in hand, diagnosed as carpal tunnel syndrome (now thought to be MS but no one can be sure! I still get some tingling). August 2011-January 2012 deterioration in eyesight - blurring and double vision - then recovery in full. Referred to eye doctor, no cause found. January 2012 - Mild sensory loss in legs. GP referred to neuro after I put everything together. February 2012 “the big one!” - woke with slurred speech, poor vision, numb skin on legs, progressed to stiff legs, horrible fatigue and general feeling of confusion. Cleared up mostly within two weeks, completely within a month. Went to A&E who told me to go back to neuro (who at that point didn’t suspect MS) and the diagnosis stemmed from my subsequent MRI plus all of these points. There have been other symptoms but I class my three main issues as the carpal tunnel type problem last January, the eyesight issues late last year and the “big one” in February. Although not big compared to other people’s problems, it was a big relapse for me. X
I can’t see why they would withold a diagnosis, but there might be resistance to DMDs because your relapses may not meet that mysterious “clinically significant” criterion. Ultimately, it’s up to the neuro to decide. Fingers crossed that he is one of the more proactive ones who believes in getting people on them asap.
Good luck.
Karen x